Lenae Lewis battles 12 illnesses
“Count your blessings; Name them one by one
And it will surprise you What the Lord has done…”
THIS LINE from the wellknown hymn is often taken for granted. We tend to forget to be thankful for the little things in life. Instead, we focus only on the luxuries that life can afford us. Now imagine a life where every waking moment, and even asleep, you are in such excruciating pain that even the medications sometimes do not take away. Imagine for a minute living a life similar to Lenaé Lewis’s, who runs out of fingers when counting the number of illnesses she lives with each day.
in October 2017, at age 18, Lewis was diagnosed with an autoimmune disease and it has been a tumbling block of illnesses since then.
“I was diagnosed with mixed connective tissue disease, which is
a mixture of three diseases: lupus, scleroderma and polymyositis,” she said, “So I experience symptoms from all three.”
By November, Lewis was told that she also has costochondritis, which gives her constant chest pains. “My rib cage gets extremely swollen, to the point where if I lay flat on my back, I can differentiate between my ribcage and my belly even though I have an extended belly,” she explained.
This was just the beginning of the end of a very active lifestyle for Lewis, who was involved in many clubs and sporting activities, with the booming social life of any teen.
“I was active in high school (Merl Grove) as a member of Peace for Champs, tourism action club, Key club, and I was always participating in games. I was social; always attending leadership events and so on,” Lewis disclosed.
She further explained that she was called a tomboy because she was often seen climbing trees, riding a bicycle and enjoying the outdoors.
“I love sports; I used to play softball, always found the time to play football with my brother and sisters...anything having to do with physical activity, I was always involved,” she said.
No cure
With no cure in sight for these illnesses and diseases, Lewis has had to give up a lot in order to try to cope, and aim for a pain-free life.
“I could go places with friends without having to worry about if I take sick, if they will know what to do. I didn’t have to worry about what happens if the pain increases, or if I faint in the midst of what we were doing. I never had to worry about any of that,” she said in frustration, “It was a happy, joyful life, but since I got sick, it has been the total opposite; I am not able to function at school, I am not able to walk five minutes without having shortness of breath, breathing issues or totally passing out,” Lewis disclosed.
Now, 20 years old, Lewis should be enjoying the care-free life of a university student. Instead, she has had to stop her studies at The University of the West Indies due to the numerous hospital admissions and the worsening symptoms as the number of illnesses increases.
“I have constant joint pains. My fingers get so swollen that I can’t bend them, I can’t move them, I have to wrap a Band-Aid around them just to remind myself that I am not supposed to even try to bend this joint or else it is going to cause me a lot of pain, added to what I am feeling already,” she relayed, “My hands and feet get so swollen that they look like boiled sausages; they can’t bend and I can’t hold anything. That’s how bad it gets.”
Suffering in pain
Being in constant pain is the hand that Lenae Lewis has been dealt and she said that she is trying to find a way to just get used to it, but this is not possible without proper and constant medication.
Lewis’ pains extend to her nerves, where extreme measures have to be taken for her to experience even a second of relief.
“I have constant nerve pains that feel like pins, needles and fire! They are mostly on my extremities; hands, fingers, toes, and foot bottom, and it gets so bad at times that I have to actually dip my feet and hands in cold water to stop the burning sensation, but the minute I take them out, the pain comes right back,” she explained.
Trying to relieve the nerve pains causes the symptoms of her Reynaud’s phenomenon to flare up. This is where her fingers and toes turn blue because of the lack of oxygen whenever Lewis is too cold or too hot.
“Sometimes my feet and my hands go dead completely and I can’t move at all, sometimes for weeks, so I would be bed-ridden all that time,” she shared.
Add cerebral vasculitis to the already long list of illnesses that Lewis suffers from. This is an inflammation of the blood vessels in the brain which causes constant headaches and when it worsens, she is unable to function.
“It also causes short-term memory loss, so you will tell me something now and I totally forget it,” Lewis said.
The once-vibrant young lady is at her wits’ end as she experiences so much pain on a daily basis.
“Sometimes my whole body is in so much pain, it feels like a truck is running over me and I can’t do anything about it,” she cried, “I have to just lie there and cry, cry, cry, because I can’t do anything about it.”
She does not even have the satisfaction of having the tears run down her cheeks as Lewis also suffers from Sjogren’s syndrome which causes mouth dryness and a reduction in, or no tears. Lewis describes her pains as, “Crushing pains, sticking pains, stabbing pains; I feel like I am transforming, like every bone is moving. Sometimes when I yawn because I am tired, my jaw bone dislocates.”
Could you imagine living a life like this? And these are not the only illnesses that Lewis lives with. There are seven others – inflammatory polyarthritis, fibromyalgia, neuralgia, obstructive sleep apnea, upper airway resistance syndrome, chronic fatigue, and impaired glucose tolerance.
Lewis told The Gleaner that in 2018, she was admitted to the Kingston Public Hospital approximately seven times, not including for special procedures, which were about six, and the three or four clinics that she has to go to every three months. She also has to take over 30 pills each day just to try to cope.
“Every time I speak about it, I find myself either crying or getting really depressed, but I just feel like I need help. I have been trying to reach out to persons and entities for help and no one has responded, but I feel like I really need help financially,” Lewis implored.
She further explained that she has had to seek help recently because she was given a medication (rituximab) which cost about $600,000. However, the pharmacy where she sourced it gave her parents the option of a payment plan. She is also in need of a mouthguard as she grinds her teeth due to the pain she experiences, but she has not been able to afford one, though it was recommended two years ago.
“My eyes are also getting worse and I can’t afford to get glasses, because I have to be focusing on other medications,” she said.
With her family and a few friends as her only support system, Lewis is unable to finance the medications for her illnesses in order to live a life that is as close to normal as possible. She has had to launch a GoFundMe account, and is now imploring the public for assistance.
If you would like to assist Lenae Lewis with her medical expenses, please send donations to GoFundMe.com/help-lenae-with-medical-expenses or Lenaé Lewis/ Melisha Barnett Lewis
National Commercial Bank (Savings) Branch: St Jago Account number: 474-667-766